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Cardiac rehab saves lives - so why do half of patients fail to show up?

The evidence shows cardiac rehabilitation reduces premature deaths and improves quality of life, yet half of patients invited still don’t attend. Siobhan Chan investigates why – and looks at what healthcare professionals can do about it.

31 July 2018, by Siobhan Chan

Imagine you had a heart attack, or needed heart surgery. Imagine afterwards you were offered an intervention to reduce your risk of dying prematurely from a cardiovascular event by 26%, being readmitted to hospital unexpectedly by 18%1, and experiencing another heart event2. One would imagine you’d say yes.

That intervention is cardiac rehabilitation, a programme of exercise and information sessions to help heart event patients get back on their feet again. Yet, despite many clear benefits, half of all people offered it don’t turn up. More still don’t complete the course.

“Cardiac rehab saves lives,” says Professor Patrick Doherty, Director of the National Audit for Cardiac Rehabilitation (NACR). “People who complete cardiac rehab live longer and have a better quality of life.”

So why are patients not turning up?

Cardiac rehabilitation helps patients feel more confident returning to normal life after a heart event. More than a dozen Cochrane reviews, as well as clinical trials and observational studies, have shown evidence of benefit and NICE recommends that patients are referred to cardiac rehab schemes while in hospital (see: The benefits of cardiac rehabilitation).

Lack of interest is a key reason. In 2015-16, at least 39% of people did not attend cardiac rehab once they’d been discharged from hospital, according to the National Audit of Cardiac Rehabilitation Annual Statistical Report 20173. And a further 13% of patients who don’t take part in programmes signed up for cardiac rehab sessions but did not attend them.

People can think “what’s the point?”, says Cem Hilmi, 44, who had a heart attack in 2011 and now volunteers with his local cardiac rehabilitation service.

“There’s a lot going through your head and you’re not thinking positively. It’s so hard to absorb information [at that stage].

“People might be frightened and not happy with their body image, they’re not feeling positive about what they’re able to do. And for some people where health and exercise aren’t a priority, they were difficult to encourage before [their heart event], so they’ll be even harder to encourage afterwards.”

Adapting to local needs

One way cardiac rehab professionals have tried to encourage patients to attend is by taking into account the specific needs of local patients. NICE guidance recommends that services “reflect the diversity of the local population”.

Judith Colley is Lead Nurse for Cardiac Rehabilitation at Barts Health NHS Trust in North East London. Improving uptake can be more problematic for services based in areas with high ethnic diversity and deprivation, according to the NACR report 2017 and Judith’s personal experience.

Cardiac rehab programmes can be successful only when they’re tailored to meet local people’s needs, she says.

Judith’s team has made changes to the service as their knowledge of the local population increased. More than half of patients who start the programme are Bengali, so her team set up a Bengali language programme. They’ve also made allowances to encourage patients to come to sessions. “We’ve changed clinic times to accommodate prayer times; we’ve employed Bengali patient advocates to spread awareness of cardiac rehab; and we’ve paused some cardiac rehab programmes during Ramadan,” she says.

Simerjit Thapar, Cardiac Rehab Sister at Bradford Teaching Hospitals NHS Foundation Trust, experienced the same in her area, where many patients are from the South Asian community.

“I found the barriers to be cultural and religious beliefs, and a limited knowledge of cardiac rehabilitation,” she says, adding that many people see their health as being ‘in the hands of God’.

The people that need to come the most are the hardest to reach.

Judith Colley, lead cardiac rehab nurse

Judith says putting herself in her patients’ shoes and providing lots of options is the key to getting through to patients. “We have to think about how that group of people sees things,” she says. “We want people to come, so that means we have to be as flexible as possible.”

But in areas where the local population changes frequently, such as Tower Hamlets where they are based, their service has to be ready to adapt. “Lots of Italian and Spanish people are moving to the area, so we may need to change the service in future to reflect that,” she says.

Other areas in London, such as Newham, have such a broad range of ethnicities up to six interpreters will need to attend each cardiac rehabilitation session.

“It’s about knowing your population – I don’t think one size fits all,” Judith says. “The people that need to come the most are the hardest to reach.”

Cem Hilmi after completing the BHF London to Brighton Bike Ride in June

I had a heart attack in March 2011. When I was discharged from hospital, they gave me tablets and let me go. I thought “ok, what now?”. I didn’t know about rehab programmes - I might have slipped through the net.

My wife was concerned and contacted the BHF’s Heart Helpline, who put her in touch with a nurse at our local cardiac rehabilitation service, who got me a place on a programme starting the following week.

If my wife hadn’t made the call I wouldn’t have known about it.

At rehab I had exercise sessions and saw a dietitian and psychologist – it was like a door had opened for me. I have no doubt I wouldn’t have recovered as well without rehab – I was in a bad way at that moment in time and I didn’t realise I needed the help.

During the first session I was walking very slowly, and at the last one, six weeks later, I completed 25 minutes of running. Six months later I did the Great North Marathon. I put that down to the support I got at rehab.

I still attend a circuit training class for people who have completed the cardiac rehab programme and want to maintain their new lifestyle. The Cardiac department at my hospital now give out my contact details to individuals who would benefit from speaking to someone who has gone through similar cardiac event. I hope that talking to me has helped others come to terms with the shock and move on with their lives.

Reaching out to patients

Inviting patients onto programmes can also be an issue for busy healthcare professionals. In some areas cardiologists refer patients onto cardiac rehab services, but this isn’t the case everywhere.

In contrast, the cardiac rehab service at Bart’s Health isn’t based on referrals – attendance relies on cardiac rehab nurses speaking to patients directly.

Judith says: “When patients stayed in [hospital] for five days [in the past], we could arrange to see them, but nowadays people are only in for one or two days [after a heart attack], and cardiac rehab isn’t their priority at the time – recovery is.” She chairs the Pan London Cardiac Rehabilitation working group and says the picture is similar across the capital.

Healthcare professionals should recommend cardiac rehabilitation services to their patients, according to NICE, whose quality standard states that “people who are referred to rehabilitation programmes before they are discharged from hospital have better rates of uptake and adherence and improved clinical outcomes”.

“It needs to be more joined-up, so everyone hears about rehab,” he says. “I would recommend some kind of follow-up, either with a GP, another professional or another healthcare organisation like a charity,” he said. “In the first couple of weeks it all needs to sink in, so you’d probably get a bigger uptake if you gave them the information [about cardiac rehab] again at another stage.”

Additionally, if GPs and practice nurses endorsed cardiac rehab directly to their patients, it could have a big impact on the numbers attending.

People are up to nine times more likely to go to cardiac rehab if their referral comes from primary care rather than acute care, according to a recent small study4. “This continuity of care may be driving greater referral and uptake,” says Professor Doherty, who is considering ways of reaching out to the GP community to encourage more referrals to cardiac rehab.

Early initial assessment of individual patient needs which informs the agreed personalised goals that are reviewed regularly.

Early provision of a structured cardiovascular prevention and rehabilitation programme (CPRP), with a defined pathway of care, which meets the individual’s goals and is aligned with patient preference and choice.

Upon programme completion, a final assessment of individual patient needs and demonstration of sustainable health outcomes.

Registration and submission of data to the National Audit for Cardiac Rehabilitation (NACR) and participation in the National Certification Programme (NCP_CR)

Establishment of a business case including a cardiac rehabilitation budget which meets the full service costs

Delivering services differently

In 2017, the NACR team at the University of York looked at the age, gender and other socioeconomic factors of eligible patients for the first time.

It found disparities in the types of patients that were more likely to attend. A total of 52% of eligible men took part, compared with just 44% of eligible women3, leading to calls from the NACR team for cardiac rehab services to tailor programmes to women. And patients from more deprived areas were less likely to attend.

The NACR report recommended that cardiac rehab programmes needed to be diversified by providing home, web and community-based options. Currently, around 82% of patients attend group-based cardiac rehab sessions, while 10% take up home-based options, 7% use undefined modes such as telephone support and only 1% take up structured online options.

One example of a successful web-based service is the University Hospitals of Leicester NHS Trust’s online cardiac rehabilitation programme, Activate Your Heart.

The creators claim it has reduced waiting times from 11 to three weeks, improved attendance at the initial assessment from 44% to 57%, and freed up 15 hours of a Band 6 cardiac rehab professional’s time every four weeks.

The programme reports that the costs of delivering cardiac rehab have halved, as they cost around £330 per patient in 2013, compared to a ‘more conventional’ approach which costs £700.

Tailored to patient needs

Professor Doherty adds: “We need to focus on the individual patient’s needs. We should be tailoring to gender, age, race, ethnicity, extent of social depression, and employment status.”

Professor Patrick Doherty, Director of the National Audit of Cardiac Rehabilitation

Over at Barts Health, the team has added “one to one” sessions to their offering, led by an instructor in a gym. Judith says: “It’s much more flexible and can be good for people who don’t normally exercise – patients can mix and match these sessions with the group sessions.”

Her team has considered conducting appointments by video calls and looked into an online cardiac rehab programme, as well as buying tablets to make inputting data more efficient.

“People are scared [after a heart attack] and it gives them that confidence back,” says Judith.

They hope this adaptable approach will appeal to patients, who will then go on to recommend the programme to eligible family and friends.

And with their plans to engage more primary care clinicians so they can refer greater numbers of eligible patients to cardiac rehab, Professor Doherty and his team hope that many more people will see the huge benefits to their health and wellbeing.

For Cem, who volunteers with his hospital by supporting people who are struggling emotionally after having a heart event, having patient advocates on hand, who can share their own experiences of recovery, could also be beneficial.

“For people who want to speak to someone who’s gone through it, it’s handy to have someone talk you through their experience,” he says. “And you need someone to follow up with you and make sure you’re ‘in the system’ – even after rehabilitation.”

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